I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Thursday, July 9, 2015

HONY and electronic breadcrumbs

I wrote about HONY(Humans of New York) once before, expanding upon my thoughts regarding the blessings that are found in this country, compared to war torn countries. I still follow this Facebook page, a glimpse of everyday people with 'normal' or perhaps just different concerns. I have taken up residence in a pediatric hospital with my son and use it as a way to check in with the outside world.

This is my second HONY story:

A year and a half ago, my son Brent and I were in NYC for follow up with his orthopedic surgeon at MSKCC, after the long and difficult treatment for osteosarcoma. Brent had received fantastic news that he didn't need to return for a year. We were celebrating.

Just prior to this travel, Brent had sentinel lymph nodes removed to be sure that his new cancer, melanoma, had not spread. We were waiting for the pathology results. Three hours after finally finishing osteosarcoma, we learned that Brent only exchanged his osteo placard for one reading 'metastatic melanoma.' I was devastated.

As we flew back to Ohio, I was filled with worry and fear.

At that time, I must have stumbled across a HONY post and impulsively commented. I generally take inspiration and encouragement where I can find it. This HONY photo showed a man in a wheelchair. The caption read "Had cancer six times. Beat cancer 6 times."

On Feb 12, 2014, I responded at 10:32 in the morning. "I needed this, in the exact moment that I saw it. Thank you." I have no specific recollection of making this impulsive comment. It was a year and a half ago.

About a week ago, around the time that my daughter had her brain surgery (incidentally this was cancer number six between our children) I got a FB notification that someone 'liked' this comment. This is a website that has over 13 million followers and gets thousands upon thousands of comments per post. Suddenly, someone that I didn't know liked a comment that was buried in over 6,000 comments, in a post from well over a year ago, one that I had completely forgotten that I made.

I thought that this was odd, but found a breadcrumb of encouragement in it. In this crazy mutant life, I pray for breadcrumbs every day. I pray for God to show me the way out of the wilderness.

But each day since then, and sometimes more than once a day, I have had notifications that someone "liked" my grateful comment about the man beating cancer six times. It has been a sort of gentle encouragement to me, a private reassurance and moment of wonder each time I saw an additional notification, as we have been fielding challenging news with both of our children who are duking it out with cancer.

Yesterday morning, I finally shared this story with a dear friend. I told Julie that I am not thinking that God lives in Facebook, nor speaks through Brandon, the HONY author, but that this was so very unusual. Somehow, I feel things might just be ok. She reminded me that there are no coincidences in this life. God works in mysterious ways.

That is no lie.

I went on to have a long and emotionally draining day in the hospital. My husband and I sat in a meeting where they outlined the various ways that my son's bone marrow transplant could go horribly wrong, and ways that our son might die. I fully recognize that they must talk about risks, and BMT is a most dangerous proposition. With bone marrow transplant, they take you to the edge of death, and hopefully keep you on this side of it. Knowing this is one thing. Hearing it spoken aloud is quite another.

I stepped out last evening with my sister to vent and grab a bite to eat. After relaying the details of the oncology meeting, I shared my HONY story with her and the electronic breadcrumbs that I have been getting this week. I am not the sort of person that goes looking for images of the Virgin Mary in a potato chip, but this feels somehow comforting. Laurie pointed out that being comforted is never a bad thing, as we walked back to the hospital together.

I went online to wind down before going to sleep to the sound of IV pumps and hospital noise. I found another "like" on my notifications and smiled in the darkened room thinking about the ultimate survivor and the breadcrumbs from God. Then I scrolled down to see a new HONY post about cancer. The photo was of a man at a baseball game. Caption:

“I’m trying to beat cancer for the fifth time. The first time was in 1997, and the doctor told me that I’d only live for six months. I’ve had it in my armpit, my knee, my back, and twice in my groin. Life keeps throwing me curveballs. I keep hitting them.”

I found further encouragement in this post, on a site that is not generally about cancer and could have just as easily shown a fun photo of a toddler: "Today's micro fashion." I scrolled down, reading some of the comments and soon came upon the photo of the man in the wheelchair who I had been talking about only an hour earlier. The person who posted the photo said: "You should talk to this guy."

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.